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Xeloda and new mets

Her_big_sister's picture
Her_big_sister
Posts: 12
Joined: Feb 2017

Hi all

My sister has new mets being found (liver/lungs), and existing mets growing while on Xeloda. Her Onc is suggesting gamma knife type surgery for both. In your experience is it likely they will keep her on Xeloda? 

Thank you

Joan M's picture
Joan M
Posts: 338
Joined: Oct 2016

Whenever you have disease progression on any chemo they consider that it is not effective and will try another regime.  I had the same problem on Xeloda.  It worked for about a year and then lung tumors progressed. I am now on Folfiri which is shrinking the tumors.  

I am not familiar with the gamma knife.  I've had ablations and Y90 for liver tumors. also had cryo ablation for one lung tumor.  

Good luck to your sister! Hope the gamma knife works for her.  

Joan M

Her_big_sister's picture
Her_big_sister
Posts: 12
Joined: Feb 2017

Joan, thank you for the response. It may actually be one of those procedures you listed. This was the first appointment I was not with her and she doesn't focus on specifics quite as much as I would like her to. I will find out more when we go to meet the surgeon about what the actual procedures are.

Do you mind me asking how many procedures you have had for your liver and lungs total? She has had surgery on her colon and her liver once each

Joan M's picture
Joan M
Posts: 338
Joined: Oct 2016

Trying to sum it up so you can see the timeframe and relationship between various procedures.  Even though I've had several procedures, I survived and feel better now than I did 3 years ago when I was first diagnosed.    

My cancer was first seen as metastesis in my liver on an ultrasound of my abdomen, and a biopsy of liver lesions was performed first, that showed the tumors were from colon cancer.  I then had a colonoscopy and removed polyps but left the tumor.  I had a CT scan and PET scan that fpound 20 tumors spread out in both lobes of my liver, and 12 in my lungs, spread through out the lobes.  The doctors all said I was not a candidate for any surgery and would only get chemo to treat my cancer.  My oncologist said I had 6 to 18 months to live. That was really scary.  It's hard to even go back and describe the emotions I went through hearing that.  I read statistics that said only 5 % of stage 4 colon cancer patients would survive 3 years, but I was determined to fight.  I have 4 children, and several grandchildren; my youngest son was only 14 years old and a freshman in high school.  I prayed that I would be able to see him graduate from high school and become an adult.  He turns 18 this May and graduates in June!   

Next I had surgery to place a port for chemo.  Then I was on Folfox for 8 rounds of chemo.  Next I took Xeloda and Avastin for 13 months until end of August 2017 when I ended up in the hospital with gall bladder problems.   Was off chemo for several months waiting for surgeries, and healing from surgeries, etc. 

I had a microwave ablation on the left side of my liver in January 2017,a Y90 theraspheres injected into the right lobe of my liver in April 2017, a cryoablation for a tumor in the upper left lobe of my lung in September 2017, that caused my lung to collapse so I had to go in for emergency procedure to have a tube placed into the  plueral cavity to reinflate my lung.  August 2017 I ended up in the hospital due to gallbladder attack, and had emergency biliary bag inserted in through my abdominal wall to drain my gallbladder becuase they wouldn't do surgery for several weeks.  I had to wait for chemo to be out of my system so I could heal before they  attempted gallbladder surgery in November 2018,  Gallbladder was atached to duodenum due to scar tissue from procedures, so couldn't be removed.  February 2018 I was finally referred to Mayo Clinic in Rochester where I had stents placed through cystic duct to drain gallbladder into duodenum.  They had to place 2 different stents in separate operations, two weeks apart for some reason.  I also had ERCP to place stents in the common bile duct so my liver could drain.   April 2018 they found fluid in my liver and I had that drained in a separate procedure the day before my colon surgery.  a colon resection in April 2018.

I went back on chemo about 8 weeks after the surgery, but ad been off chemo for several months so I had growth in tumors in my lungs.  I've been Folfiri since June 2018. 

I had the last ERCP in December 2018 and the doctor said he was able to stretch my bile ducts so I don't need to have the stents in common bile duct anymore.  The pigtail stents will be left in the cystic duct indefinitely and may need replaced at some time in the future.  

That about sums up surgical procedures and chemo.   I hope it is helpful to your sister, if nothing else so she knows the road ahead of her may get rough, but she can survive. 

Please feel free to send a private message to me with any other questions.

Joan 

flutemon's picture
flutemon
Posts: 11
Joined: Jan 2019

I had a type of laser treatment on my liver mets called sbrt (stereatactic body radiation treatment) that is like gamma knife (which is only used on the brain).  They used it to kill 2 of my liver mets - 2.0 cm and 2.5 cm - that were in hard to resect places by the hepatic artery/vein system.  I had 3 other mets resected.

I had right hemi-colectomy to remove my cancer and was staged 3b (T4N1aMx). Did mop up xeloda after surgery for 4 months. During that time the liver mets grew.  I was a little freaked out, but just had to move on. After mets were found I did folfiri with avastin - 6 rounds. CT/MRI showed no growth or shrinkage on folfiri and liver surgery was scheduled.  Now on mop up folfox for 6 cycles.  Hoping to be clear of tumors on my next scan - April 29.  

As you can see, I also started on xeloda and had mets grow.  They have changed my chemo 2 more times looking for the 'magic formula'.  We had avoided folfox because of the neuropathy problems with oxaliplatin - I am a polio survivor and flutist and was worried about adding to my neuromuscular problems. But I want to live and will try ANYTHING!  Life is more important.  I have a new grandson that I want to know (and I am his nanny while mom works!) 

Hope all goes with few problems! KEEP FIGHTING!

sylvia_mae
Posts: 37
Joined: Oct 2018

hi, so there is really a possibility that XELODA could no longer work on shrinking tumors. I had my xeloda again last jan. this year. 1st cycle was okay cea lower down from 40 to 29 but on 2nd cycle after finishing my cea went up it became 47. still i continue my xeloda up to this moment.. i had difficulty having bm but no blood. i did not go to my doctor yet because i am scared. they wanted another surgery with complete removal of my rectum where it metastisize and life time colostomy.

 

this is really eating the whole lot of me. i have pain only during wanting to defecate or fart. it is really difficult i have been fighting this disease for 3 years already. and i am currently in the state between fighting and giving up. 

Joan M's picture
Joan M
Posts: 338
Joined: Oct 2016

It's a hard decision to make when they talk about the colostomy.  I have not had to face that so far. 

Have you checked out any clinical trials? 

I am praying for a cure for my stage 4 cancer.  I know some may think I'm crazy, but I read about other cancers being cured or going into long term remission even at Stage 4.  Right now they are making progress with immunotherapy for those wieh Microsatelite instability.  I think they are close to figuring out how to get beat the Microsatelite stable type also.  

sylvia_mae
Posts: 37
Joined: Oct 2018

not yet i did not return to my doctor yet. but still i continue the xeloda after i finish maybe il come back and talk to her. i have been experiencing wanting to defecate and bloating during xeloda treatment. and it does really hurt my stomach and no apetite at all but i tried my very hard to eat at least small amount of food.

 

good luck to us! believing in MIRACLES and CHANCES of surviving in GOD'S WILL.

Butt's picture
Butt
Posts: 220
Joined: May 2018

I know what gamma knife is but my oncologist advised against it. Butt.

Annabelle41415's picture
Annabelle41415
Posts: 6020
Joined: Feb 2009

Treatment and surgery and the course of the plan might change from the initial treatment that was discussed.  I'm sorry to hear of your sisters new mets.  Sometimes a new treatment can better address this.  Hope she does well with this new treatment.

Kim

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